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Tessa Jowell Brain Cancer Mission

Volume 797: debated on Monday 13 May 2019


My Lords, with permission, I shall repeat a Statement made by my right honourable friend the Secretary of State for Health and Social Care in the other place on the Tessa Jowell brain cancer mission. The Statement is as follows:

“Mr Speaker, I would like to update the House on the significant progress that we have made in tackling brain cancer, including a new innovation that is now available across England. For far too long, tackling brain cancer has been too much in the ‘too difficult’ box. We are determined to change that.

I pay tribute to the Petitions Committee, which did so much work on this; to the Member for Mid Norfolk, who drove this subject in government as Life Sciences Minister; to the Member for Castle Point as former chair of the APPG, which brought parliamentarians together; to the Member for St Ives as the current chair of the APPG; and, of course, to Baroness Tessa Jowell, who campaigned passionately and tirelessly while battling the illness herself and sadly passed away last year.

Brain cancer is the most common cause of cancer-related death in children and young people under 19. Baroness Jowell called for all patients to benefit from 5-ALA, or ‘pink drink’ as it is otherwise known, a dye that makes cancerous cells glow under ultraviolet light, thereby making it easier for surgeons to target the right areas. Trials have shown that, when the dye is used, surgeons can successfully remove a whole tumour in 70% of cases, compared to 30% without.

I am pleased to inform the House that we have now rolled out this ground-breaking treatment across England, with the potential to save the lives of 2,000 patients every year. This is all part of the £33 billion investment that we are making in the NHS long-term plan. This medical procedure will now be expanded to every neurological centre in England. It is a fitting testament to Tessa’s memory.

It is worth pausing for a moment to remember Tessa’s courageous words urging us to rise above our differences. She said that this,

‘is not about politics but about patients and the community of carers who love and support them. It is … about the NHS but it is not just about money. It is about the power of kindness’.

Tessa represented the very best of our democracy and of our Parliament. On behalf of all those who have died, all those who have campaigned—children and adults alike—and all those seeking to do research, of which there must be more to come in future, we are acting.

I want to mention three areas in detail. The first is research. During the past year, the Government have made available an unprecedented £40 million to fund cutting-edge research of new treatments and drugs through the NIHR. This will build on the UK’s outstanding reputation for neuroscience and oncology research, and increase the quality, quantity and diversity of brain cancer research. The funding was further enhanced by Cancer Research UK committing an additional £25 million to support brain tumour research. The size of these pledges will cement the UK’s position as a leading global centre of research into brain cancer.

The second area is our NHS cancer workforce. We now have a record number of specialist cancer staff in the NHS and that number is set to grow as we put a record £33.9 billion into the NHS over the next five years. Health Education England’s cancer workforce plan and our upcoming NHS people plan will set out in detail the steps that we are taking to recruit a world-class cancer workforce. We made an additional investment of £8.6 million in the cancer workforce last year. We aim to have 300 more radiographers starting training by 2021.

The final area is empowering patients. My department has worked closely with the brain cancer mission, Jess Mills and others to ensure that patients are at the heart of all our efforts. The mission brings together government, the NHS, researchers, pharmaceutical companies and patients. Together, we are working to ensure that data is shared and disseminated so that more patients in the UK and internationally can benefit from what is learned. Due to the complexity of brain cancer, we must provide joined-up care that meets each patient’s unique needs. The NHS is focusing on improving care for brain cancer patients to ensure that they have access to dedicated out-patient clinics and consultations wherever they live.

I hope that the whole House will recognise the important progress that has been made over the past year in rising to the challenge set by Baroness Jowell and the families of those who have lost loved ones. This has been possible only through the collective efforts of patients, the NHS, charities and industry. The work has, and will continue to be, collaborative.

In her final speech in the other place last January, Tessa said:

‘I am not afraid. I am fearful that this new and important approach may be put into the “too difficult” box, but I also have such great hope’.—[Official Report, 25/1/18; cols. 1169-70.]

That hope was an inspiration to us all, and it still is. We must keep striving, and keep rising to the challenge that she and those families have set us. I commend this Statement to the House”.

My Lords, that concludes the Statement.

My Lords, I thank the Minister for repeating the Statement. Of course, it is a matter close to the hearts of many noble Lords here, particularly those of us who took part in the debate when Tessa Jowell spoke in this House for the last time. Who could forget Tessa’s determination to fight for change, so that in the future people would not die of brain tumours but that research would lead to prevention, early detection and more effective cures, and that these would be available to everyone throughout the NHS, without being dependent on where you live? I pay tribute to Jess Mills, Tessa’s daughter, and her family for their continuing commitment to fulfilling the challenge that Tessa set all of us, as the noble Baroness quite rightly said.

We know that brain tumours are indiscriminate; they can affect anyone at any age. What is more, they kill more children and adults under the age of 40 than any other cancer, yet historically just 1% of the national spend on cancer research was allocated to this devastating disease. We all welcome the progress made so far by the Government; we congratulate them and support the fact that treatments are now available across the country that were not available when Tessa spoke to us in this House. However, we also know that the NHS faces a cancer diagnostics crisis. Cancer Research UK has pointed to chronic shortages in the diagnostic workforce, with more than one in 10 positions unfilled nationally. Hospitals are reliant on outdated equipment and some of the lowest numbers of MRI and CT scanners in the world. The UK is fourth from bottom in a league table of OECD countries with the lowest number of CT scanners per million inhabitants.

As the Minister rightly said, this is a question of both resourcing and staffing. In today’s Statement, we have been given sight of the key points that have been touched on and we are pleased that it references the upcoming workforce plan. However, it would be useful if she could expand on this point, specifically around the need for a global scientific workforce and the plans for immigration in relation to the research community. Because without the right skills and technical staff in place, a lot of the research funding and momentum achieved in the past year will not amount to very much. She will be aware that a mix of domestic and international scientific talent underpins the UK’s position as a world leader in life sciences. The 2018 immigration White Paper was not fit for purpose, in the view of those on this side of the House. The £30,000 a year salary threshold would have had a devastating impact on the recruitment of junior research capacity and the increased cost and bureaucracy requirements of the visa system. Indeed, the British public recognise the importance of an international research workforce to the UK. Ninety per cent of the public think scientists make a valuable contribution to society and 86% want to increase or maintain the level of immigration of scientists.

While I absolutely accept that progress is being made in the noble Baroness’s department, this question applies across government and I should like some reassurance that that is understood and action is being taken. Neurosurgery is no exception when it comes to the problems of cancer targets. In March 2019, the 18-week completion target for referral to treatment pathways stood at 81.3% for neurosurgery, 5% lower than the average for all specialties. This made neurosurgery the worst-performing specialty, almost certainly because of staffing shortages in these areas. Therefore, while I absolutely welcome the Statement and the progress being made, we all have to accept that we have some way still to go to fulfil the ambition and the targets that Tessa Jowell set us.

My Lords, I thank the Minister for repeating the Statement. I had the honour of responding to Baroness Jowell’s maiden speech on 23 May 2016. I looked it up in Hansard this morning. She recalled Seamus Heaney’s injunction to his wife:

“‘Noli timere’—‘Do not be afraid’”.—[Official Report, 23/5/16; col. 167.]

As it turned out, we did not have long to wait for her to show how fearless she could be. I responded to her maiden speech by saying that I felt sure she would make her mark very soon. Sadly, she did not have as huge an amount of time to make her mark as I had expected—but nobody who was in the Chamber for her valedictory speech in January 2018 will ever forget her demonstration of total fearlessness.

5-ALA received FDA approval for use in the USA on 3 July 2017, just over a year after Baroness Jowell joined your Lordships’ House. Use in the UK was given NICE approval on 10 July 2018, just two months after she died. I clearly welcome today’s announcement, but I have some questions for the Minister about 5-ALA and its rollout. What weight does NICE give to treatments that have received approval by the FDA? Is it usual for a treatment that is so obviously effective to wait nearly a year before being used routinely? Will it be universally available to all those who stand to benefit from it?

I thank the noble Baronesses, Lady Thornton and Lady Jolly, for their very important and moving contributions to this debate. I will start by responding positively to the points made by the noble Baroness, Lady Thornton; of course she is right that maintaining a strong and vibrant life sciences ecosystem is absolutely a cross-government endeavour. She is also right that the mobility of scientists, from the technical and research level up to neuroscientists and neuro-oncologists, must be the business of the whole of government. We take that as a core aspect of the life sciences strategy and shall continue to do so.

Both noble Baronesses were absolutely right to say that workforce is key. As I said in the Statement, our upcoming NHS people plan and the cancer workforce strategy will ensure that there is a holistic plan to ensure that the technical workforce—including radiologists, as I already mentioned—is in place. HEE is also leading on specific work to ensure that we recruit and train an appropriate level of neuro-oncologists. This has been identified as necessary going forward.

To make sure that we make progress, we must go forward in four specific areas: research, early diagnosis, delivering on the long-term plan commitment to see 55,000 people a year surviving cancer for five years by 2028 and, as the noble Baroness, Lady Jolly, rightly pointed out, ensuring that when those people are diagnosed they have access to the best and most innovative treatments. That is exactly why we announced the boosting of the accelerated access collaborative—to ensure that we are identifying the best and most innovative treatments and getting them through the regulatory testing and uptake systems of the NHS much more effectively than before.

We have been putting in place a number of proposals to do this, and the mission has been playing an absolutely core strategic role in bringing together key individuals across government, the NHS, charities, industry and patients. I do not think that we could ever have imagined seeing such impressive progress. We can only thank it for that, particularly for the work it has been doing in research to develop the BRAIN-MATRIX trial. It is exceptional, and the mission should be given credit for that work. Through that research we will see earlier diagnosis and delivery of the commitments and targets that we have under the long-term plan to see more people diagnosed, treated effectively and surviving cancers.

My Lords, a year ago yesterday we lost somebody who was a colleague, a friend and an inspiration to us all. I do not think that any of us who were involved in the debate that Lady Jowell initiated in January last year, whether they had known her for a long time or were only just getting to know her, will ever forget the extraordinary courage and leadership that she showed that day. As my noble friend pointed out, the impact has been truly profound, including through the brain cancer mission set up in her name, of which I am proud to be a patron. I am delighted that the Government have chosen this anniversary —an unwanted one, of course—to give us an update on the very important progress that they have made.

I am delighted by the news on the pink drink, which was one of the issues that Lady Jowell highlighted that day, as well as with other progress. As well as paying tribute to my noble friend and colleagues in the department, I join other noble Lords in congratulating the brain tumour charities, Cancer Research UK, patient groups, and of course Jess and her family for keeping up pressure and momentum so that we can make a difference on this dreadful disease.

Of course, the work of curing brain cancer is one not of months but of years and even generations. While I absolutely welcome the announcements today, can my noble friend give a commitment—which I am sure she will be happy to do—that the support the Government are providing will never waver during the long periods when we have to go through research and have to change things to improve outcomes, and that that commitment will always be there for this Government and any future one?

On a specific point, it is good to hear my noble friend talking about adaptive trials through BRAIN-MATRIX, and about Health Education England training a new generation of neuro-oncologists. Is she able to give specific details about the kind of support that the Government and others are prepared to offer for those? For untreatable cancers, having highly specialised staff as well as different ways of carrying out trials is critical to keeping people alive for longer—which is of course what Tessa’s speech and the leadership she showed was all about.

I thank my noble friend for his comments and in particular for the leadership he showed in responding to Tessa’s call to arms to improve outcomes for those with brain cancer diagnoses. I can absolutely give him the commitment that the Government’s commitment to the mission will not waver, and there is a very good reason for this. The outcome we are already seeing is so significant; over the last 12 months there has been the launching with partners of the mission and the making available of funding that has resulted in 24 brain cancer research proposals—the highest number ever—with a further four under active consideration. In addition, progress has been made on moving towards new service and staffing models, with commitments in the long-term plan and the life sciences sector deal. This will deliver exactly what my noble friend is talking about: namely, better care and support for patients, targeted to the kind of diagnoses they have, which is exactly what the brain cancer mission has recognised, and exactly the specialist advice which government needs to tailor care for patients in the most appropriate way when they most need it.

My Lords, the update is most welcome. I will say two things to my noble friend. First, as part of the update, would she be able to update us on outcomes, particularly one-year and five-year survival rates, which are what we most want to see moving consistently in the right direction? Secondly, my noble friend will recall that about eight years ago we in the coalition Government agreed a programme for investment in positron emission tomography—PET—scanners. One of the particular reasons we did so was that patients in this country through the NHS were not accessing a form of radiography that would be particularly relevant for those with brain cancer, because of the minimisation of collateral damage to tissue around the tumour site. What my noble friend was saying about the identification and targeting of tumours is true not just for surgery but for radiography. Can she update us also on the availability of PET scanners through the NHS?

I thank my noble friend for his question. He is absolutely right that we want to focus on outcomes. That begins with earlier diagnosis, shorter waiting times and access to treatment. However, when it comes down to it, we want to know that we have better survival rates. Cancer is a priority for the Government so that we can improve that, and the quality of care for patients. I am pleased to report to the House that survival rates are at a record high: since 2010, rates of survival from cancers have increased year on year. However, we know that there is more to do, and we will never have any measure of complacency about this. That is why in 2018 the Prime Minister rolled out a package of measures to see three-quarters of cancers detected at an early stage by 2028—the current figure is just over half. The plan is to radically overhaul screening programmes to provide new investments in state-of-the-art technologies to transform the process of diagnosis and boost R&D. My noble friend is absolutely right that one of the areas that we must focus on is ensuring that treatment has the lowest burden of side-effects possible. The proportion of cancer survivors living with long-term disabilities as a result of treatment is high, so having more targeted treatment is absolutely a priority within our cancer strategy. I will be delighted to write to my noble friend with a specific update on where we have got to with PET scanners.

My Lords, I echo noble Lords who have said what a fitting and appropriate tribute it is to Tessa that, on this anniversary of her death, we have heard this encouraging update from the Minister. It was a great sadness to me that I missed her final speech in your Lordships’ House because I was abroad, but having worked with Tessa for more than 20 years in many different roles, I found it unsurprising that she showed her characteristic determination, courage and campaigning skills, which she carried on with absolutely to her final days. It is extraordinarily good to know that her daughter, Jess Mills, carries on this work today, as my noble friend Lady Thornton said.

I make two points that I know that Tessa would have emphasised. The first is the importance of what one might call translational research, as the Minister said. I know that one problem that Tessa had as an individual was that she could not find out, except by exercising her characteristic energy and skill with the computer, what was going on. It is very important that in developing both treatment and research in these difficult areas of cancer—the glioblastoma from which she suffered being one of the most intractable—individual patients have the opportunity to know more broadly what is available.

That is why it is particularly important that the announcement today reveals not only new treatment but emphasises that it will be available in all cancer centres across the NHS, because not all of us are blessed with Tessa’s energy and ability to find things out. Particularly when people are feeling very vulnerable when they are diagnosed, their need for clear available information is paramount. It is very good to hear that that will be more available in future.

I thank the noble Baroness for her comments and think that she has hit the nail on the head. I think I can say that Tessa’s characteristic verve is being carried on and honoured by those involved in the mission: I have been in post for a relatively short time, but I have already met the mission and Jess twice, and they have nailed me down on commitments and ensured that I follow through on commitments that my predecessor, my noble friend Lord O’Shaughnessy, had made. It helps that he is still involved in pushing them forward.

One of the key principles of the mission is that it provides a convening function, bringing together government, the NHS, charities, industry and patients in working together to identify and drive through progress on areas that need improvement. One key area that has been identified is patient care, support and communication. As the noble Baroness said, Tessa was passionate about ensuring that patients can get rapid access to new treatments and know where they may be. That is one of the principles behind the brain cancer matrix. Separately, we have introduced the accelerated access collaborative programme to try to bring in other treatments that might be complementary to patients as quickly as possible through the NHS system, recognising that the NHS, while incredibly innovative, can be low and slow at times in adopting those innovations across the system in a consistent way. We want to make that better.